Faslodex/Fulvestrant

lesleyb

Hi everyone, anyone been able to get this on compassionate grounds.  My onc wants me to take it.  However, the first injections is free, the next three months you have too pay for and then it is free for life.  it is $900 a month. Being on a pension, I dont have that sort of money to throw away.  I still have other options.  Dx 5 years ago MBC, the only treatment I have had so far is Arimidex, Xgeva bi-monthly and Aromasin. I dont want my family paying for a treatment that may not even work.  Best i go straight to Xeloda methinks.

wendy55

Hi @lesleyb,
this drug was one that I too had been looking at, however my onc put me on xeloda instead, which I have been on for 2 years, there is a lot of information here re side effects and how to deal with them so wont go into it all over again, as far as I know there is no compassionate access scheme for faslodex and I was given exactly the same information as you, first injection was free then I had to pay for the next 3 at $900 a go, then if it worked the rest were free, so think how it works, if the drug was that good overall for a lot of patients then why isnt it on the pbs?, its a calculated risk, so requires some research and discussion if your onc is a woman ask her if this is a drug that she would take herself, I spoke to a lady only last week who had been on tamoxifen for a period of time and then was put on faslodex and she told me it had changed her life, it was fantastic, so its all about weighing everything up, as you said you are on a pension, so this will be hard, your onc has given you a alternative and perhaps thats the way to go faslodex will always be there as an option  for you.
There are quite a few of us" capecrusaders, "here online Cape being that xelodas real name is capecitabine, so good luck, we are here anytime for any help or information,
wendy55

Giovanna_BCNA

hello @lesleyb
Thank you for your question, I hope that one of our online members will be able to assist you.
I have attached the Faslodex patient access programme information that explains the process for accessing the medication.  Looks like you have some options regarding treatment which is great.  Best to discuss with your medical oncologist regarding your treatment plan and any concerns you may have regarding Faslodex.  All the best

lesleyb

Thank you.

bronmeg1

Hi @lesleyb, I was started on Fulvestrant today & as far as I know I have it on compassionate grounds.  I admit today was a blur as I was told my latest scans showed that the current meds were no longer controlling my lung mets & Fulvestrant is the next course before chemo.  As I live in a rural area, they were unsure if it was available straight away, but was, so was given the injections.  As it requires a loading dose, I will be back in a fortnight, so will have a better idea of costs.
I'm not looking forward to the side effects, the same as other hormone treatments.
Good luck.  Cancer is such an expensive disease!!